Giving dementia the attention and support it needs - and deserves

The recent meeting of the Cambridge Health Network on dementia swung between pessimism and optimism, reflecting perhaps the national feeling. Dementia, said several speakers, is where cancer was 30 years ago and HIV 20 years ago: feared, not talked about, neglected, and thought untreatable. But there’s every reason why the same progress can be made with dementia as has been made with cancer and HIV.

About 750 000 people in Britain have dementia, and that number is expected to increase to one million by 2021 and 1.7 million by 2050. Some 70 per cent of the 60 or so people in the room had relatives affected by dementia. The cost to the UK is £17bn and the global cost $600bn, the size of the economy of Indonesia, the world’s 17^th largest economy. These figures have to be treated cautiously, said Stuart Bell, chief executive of the South London and the Maudsley NHS Foundation Trust, as there is a 24 fold variation among primary care trusts in the rate of identification of patients with dementia, and Britain has half the rate of diagnosis of France, Ireland, and Spain.

The government introduced its dementia strategy three years ago, putting an emphasis on diagnosing the condition as early as possible, improving services, and reducing long term costs. Many people, however, are not being diagnosed until late, services are often poor and fragmented, many needs are not being met, and carers are carrying a huge burden. “The dementia strategy is coming in with a whimper,” said one chief executive of a district general hospital, and there is a “serious risk of fizzle” said another.

The attitude of clinicians is one root of the problem. Jeremy Hughes, chief executive of the Alzheimer’s Society, described attending a meeting of GP leaders where one said: “We shouldn’t bother diagnosing dementia because nothing could be done”, and many nodded in support. Once people are diagnosed, Hughes said, the biggest gap is information. People don’t know where to find help, and dementia is the only disease where the response is mainly from social rather than health services, and socil services are means tested and being squeezed hard.

Patients with dementia often have other conditions, particularly cardiovascular disease, and those conditions are poorly managed. Around 70 per cent of patients in hospital are elderly and half have some form of dementia, and yet hospital staff are often poorly trained in dealing with patients with dementia. Psychiatric liaison services are largely geared towards patients who self harm, and end of life care is a big problem, said Bell.

A chief executive of a DGH said that he often felt that he was “running a hotel for the confused” and pointed out that among patients who had been in the hospital for five days 50 per cent didn’t need hospital care, rising to 85 per cent of the confused. Bell said that 85 per cent of patients with diabetes receive the care they need compared with 25 per cent of patients with mental health problems, and as it’s higher among patients with schizophrenia it must be lower among patients with dementia. “The system doesn’t match the need,” said Ruth Poole, group clinical director of Healthcare at Home.

An area of neglect emphasised by both Bell and Hughes is research: in 2007-08 Britain spent about £250m on cancer research but only £32m on dementia research, and pharmaceutical companies are pulling out of dementia. The National Institute for Health Research is, however, investing in dementia research and new centres are starting. There are great possibilities for treating dementia with existing, often off-patient drugs, which don’t interest pharmaceutical companies. Much can also be achieved by finding better ways of organising and coordinating care and through assisted technologies.

The main message of Poole was that a big difference could be made in the lives of people with dementia and their carers through simple measures. Healthcare at Home put together a group of carers, clinicians, scientists, and managers that identified huge gaps in present systems of care and then designed a model of care built around the patient and the carer not the providers. The essence of the model is that every patient has a “named key worker” and an agreed plan and a wide range of services are available 24 hours a day seven days a week and are coordinated. Many people in the room also put a strong emphasis on training, arguing that everybody who works with people with dementia should have regular training as people who work with food have to have training in food hygiene.

The aim of Healthcare at Home’s programme is to give patients and carers maximum independence and keep them at home and out of nursing homes and hospitals. Poole presented figures showing that such programmes can reduce hospital admissions, reduce their length when they do occur, and save money. But she accepted that these were preliminary data, and a sceptic in the audience observed that people having been saying for more than a decade that coordinating care in the community can reduce hospital admissions but change doesn’t happen. This led to a debate about the difficulty of closing hospitals with everybody in the room seeming to accept that it had to happen but was politically just too difficult.

So will services and treatments for dementia improve as much in the next 15 years as those for cancer and HIV have improved in the past 15? One strong driver of change may be that the baby boomers—me and most of the others in the room—have parents with dementia and are approaching dementia themselves and may use their wealth and political muscle to demand improvement.

As part of the “new optimism” around dementia the Design Council is challenging people to come up with ideas to improve the lives of people with dementia. The prize is a share of £360,000 and professional support to make your idea happen. To get involved, click here.